I want testing done regarding my Mitochondria. Is it worth paying £200+? I don’t fancy taking a biopsy if I don’t need to.

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My question is what treatment it could lead to? A biochemist tested some values for me (privately because he was curious looking at my other tests) and they were very low (ATP and 2 other things--don't have the results in front of me). But did that help with treatment? Not for me. Probably most of us have mitochondrial dysfunction (rather than a primary mito disease), but what can we do about it at this stage? Supplementing things made no difference for me and others have said pretty much the same.

The MEA Ramsay Research Fund is funding, or has been funding, four separate research studies here in the UK into the role of mitochondrial dysfunction in ME/CFS and how it should be assessed - including the commercial test you refer to

The main problem here is that this quite expensive commercial test has not been validated by other independent researchers - which is why it is not used (and is normally dismissed) by NHS doctors who specialise in muscle and mitochondrial disease

The results from the research we have funded are now being analysed, along with some further laboratory work which has been done on this commercial test by two other researchers. The results will then be submitted for publication. Once they have been published, the MEA will be making a further statement on this test.

In our present state of knowledge, there is insufficient evidence to conclude that any of these fairly expensive commercial mitochondrial function test results are a reliable indicator of muscle or mitochondrial involvement or function in ME/CFS

And if this needs to be investigated, to rule out primary mitochondrial disease for example, then there are 'Gold Standard' NHS tests available (muscle biopsy, MRS etc)

I would add that I have a deep personal interest in mitochondrial dysfunction having used my own skeletal muscle in the first research studies (which took place in the 1980s here in the UK) to demostrate evidence of mitochondrial dysfunction in ME/CFS.

The first research, which I did with Professor George Radda et al at Oxford, and involved magneruc resonance spectroscopy, was published in The Lancet.

The second, which involved electron microscopy of mitochondria from biopsy specimens, was carried out by Professor Mina Behan et al in Glasgow.

Abstract
A patient with prolonged post-viral exhaustion and excessive fatigue was examined by 31P nuclear magnetic resonance. During exercise, muscles of the forearm demonstrated abnormally early intracellular acidosis for the exercise performed. This was out of proportion to the associated changes in high-energy phosphates. This may represent excessive lactic acid formation resulting from a disorder of metabolic regulation. The metabolic abnormality in this patient could not have been demonstrated by traditional diagnostic techniques.

I want testing done regarding my Mitochondria. Is it worth paying £200+? I don’t fancy taking a biopsy if I don’t need to.

Thanks.

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I had ATP profile testing done by Sarah Myhill several years ago and it showed severe deficiencies re energy production. It was done with blood work, no biopsy needed. So it was nice to get confirmation that I had a real problem; however, it did not result in any additional treatment. I was already taking all the mito supplements Dr. Myhill recommended. I might have increased my CoQ10 based on the results, but that was it.

So as @Sushi said, what treatment could it lead to? If you wanted it to show to your doctor or family that it's not all in your head, then it might be worth it.

I am taking the standard ‘protocol’ from Dr Myhill (supplements only because I’m not a caveman ), and it helps a little bit, I can’t lie. However, I just think that £200+ is a LOT of money to spend. I won’t bother then. I’d just rather ‘a test’ than muscle being taken from me.

Can anyone tell me what causes the mitochondria within a CFS patient to become haywired?

Can anyone tell me what causes the mitochondria within a CFS patient to become haywired?

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From the metabolomic study done recently by Fluge and Mella, there seems to be a switch to anaerobic glycolosis, in the mito.
PDH is pyruvate dehydrogenase.

We hypothesized that ME/CFS is associated with defective oxidative metabolism involving PDH, leading to increased utilization of ketogenic amino acids to fuel the TCA cycle.

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These observations suggest that the systemic exertion intolerance in ME/CFS may, at least in part, involve a switch to anaerobic glycolysis, with generation of lactate at a significantly lower workload threshold than that observed for healthy subjects.